The Colon Club

Hey everyone,

I would love to hear your input with regards to this. My husband went for colon resection about 4 weeks ago and has recovered very well. PET-CT scan shows activity on 5 distant lymph nodes (Para Aorta up to Supraclavicular) and the doctors have concluded it's infected.

We just had a meeting with our medical oncologist and he has proposed 2 treatment plans for us to choose:

1-- Watch and wait approach. Essentially he's suggesting we don't do any chemo and wait for another 2 months for CT or till the nodes grow bigger/spread before we start anything. There are 2 benefits to this, 1- my husband will have a good quality of life, and 2- if the nodes grow bigger, then it's easier to track if the chemo is working. I find this suggestion extremely risky because first of all, my husband's tumour is Grade 3 (poorly differentiated) and 30/31 nodes on his pathology came back positive. I wonder why is this was even proposed in the first place?

2-- We start chemo, but not until another 2-3 weeks (so 6-7 weeks after surgery). CAPOX + Avastin for 6 cycles with CT scan scheduled every 2 months. I understand Avastin shouldn't be taken any sooner than 6 weeks after surgery because it might slower the healing process but I am not certain why we can't start 1 cycle of chemo first and add Avastin later on. In his opinion, it's better wait another 2 weeks to start the CAPOX + Avastin than to have Avastin added later.

I am really worried and confused, because I know things move extremely slowly in the Netherlands when it comes to healthcare, largely due to budget constraints and resources. There are no private options in the country. I don't want my husband to be a victim of the system.

Looking forwards to your thoughts.

Thank you!!
Siti

Hi Siti,

Sorry to hear about your reason for being here; it sounds like you’re well-informed though and great that he recovered from surgery well.

I don’t have a strong view on the distant LNs as this isn’t really my area sorry, but others will. That said, I’ve never heard of ‘watch and wait’ for LNs that lit up on a PET, and indeed under the circumstances I would be leaning toward chemo now.

I don’t see any reason not to start chemo after 4 weeks, then add Avastin after 6. I restarted FOLFOX (no Avastin) 3 weeks after my rectal resection.

I just wanted to add that I was also diagnosed in the Netherlands (The Hague), and although I agree the system is slow and bureaucratic, I did find the treatment to be thorough and the protocol offered reasonably appropriate (although it did differ from what I now know to be the US / Oz approach).

Best of luck,
Rob

I would expect that he would have adjuvant chemo no matter what, given the number of malignant nodes that were removed.

My doctors have always said no to PET scans for me, especially soon after surgery, when they said that the chances of a bunch of things lighting up that were not malignant were too high. Not everything that lights up on a PET is malignant. Sometimes it is simply inflamed for some other reason, which seems to be a strong possibility with your husband's nodes. As as example, my husband had a pet scan at a couple years after prostate cancer surgery, because his PSA value was rising suspiciously. His right hip joint lit up. If I recall correctly they biopsied it, and it became clear that it was arthritic inflammation, not bone cancer. A number of years later he had a hip replacement.

It is pretty normal for chemo to start 5 or 6 weeks after surgery. Whether it is better to wait a week in order to start Avastin at the same time, I haven't the faintest idea.

This article gives a very good overview, I think.

https://www.uptodate.com/contents/color ... the-basics

I thought you might be particularly interested in this paragraph:

Benefit has also been shown for adding one of the epidermal growth factor receptor (EGFR)-targeted agents (cetuximab or panitumumab) to first-line chemotherapy if your tumor does not have a RAS or a BRAF V600E mutation. Newer data from clinical trials suggest that the site where the original colorectal cancer was located – right sided (ascending and transverse colon) versus left sided (descending and sigmoid colon, rectum) (figure 1) – might influence the relative benefit of adding an anti-EGFR agent or bevacizumab to the first-line chemotherapy regimen, with cetuximab being more effective in patients with left-sided primary tumors.

I'f your H doesn't have a KRAS mutation, you might ask the oncologist about using cetuximab instead of avastin.

Start folfox as soon as you can, add the other regiment later. If it's in your lymphatic system, you don't want to wait and see. That's my opinion.

Thank you everyone for your feedback.

Indeed we decided not to go with the watch and wait, it’s too risky.

Boxhill — thank you for sharing. We’ve asked our oncologist about FOLFOX + Anti EGFR but he seem to suggest that both regimens are equally as effective and he would keep this option open for second line.

I am sorry to read this.

This is the exact same progression as my wife, beginning in the fall of 2014. She had an aggressive treatment plan established by Dana Farber in Boston, MA. One full year of 5FU and Avastin with about 3/4 months or Oxy until neuropathy stopped it.

She was then on maintenance chemo pills and Avastin for years 2 through 4, and now is back on aggressive treatments again with additional positive Para-aortic nodes. If the patient is young and can handle the aggressive treatments do it. Whatever nodes can be removed by surgery do it as well. Be purposeful in action and get other points of view, but do not wait for things to progress further.
Get to treatment as soon as recovery is met from the resection surgery.

Best of luck going forward.
WS

Thanks for your input WS.

I am really sorry that your wife had to endure this too. How is she on normal occasions? Do you guys lead a normal life? I see in your signature that you’re pending genetic results, what are they?

I can’t really find much info on distant lymph node mets and most papers seem to come out of Japan/Korea. Did you try to contact the doctors there to see if they have better knowledge on how to treat this disease? I tried writing to at least 4-5 of them via contact details on the paper but so far no answer.

Genetic testing was inconclusive at this time. Maybe we will find out more at a later date.

If you live in the Netherlands you should have access to adequate and professional care. Go to your local cancer center and they should be well aware of what the treatment protocols are for this type of Metastasis. The plan that was followed is called the "Cairo Study" or plan. We are currently beyond that and breaking new ground, I suspect with initial treatment protocols again.

Lymph node metastasis is not the norm for CRC patients. You can find stories here with similar metastasis by searching Colon Talk blog conversations under "Olymphians," "Para Aortic," and "Virchow" Lymph node. The history goes back several years, so do not be discouraged in reading, There have been many advancements with each year moving forward as you will see reading older conversations.

Keep us posted of your progress All the best.
WS

Hi everyone....my husband is scheduled to have 2 para aortic nodes removed this Wednesday....the plan is to start maintenance chemo once he is healed and ready....nervous but hopeful...I will post an update later in the week.
Jep

Best wishes this week Jep.
I hope that they are successful on getting what they are looking for.
WS

Siti,
...As for do we have a normal life? Remember, once cancer enters a family's life, we all adjust to the "new normal" and appreciate each day. Life will never be the same like we were 20 again, nor 30, or even 40; but life at any age is well worth living!
WS

Sending you and your husband my best wishes and a successful surgery Jep!

WS, I’m still learning to cope. I am trying my best to stay positive but it’s so overwhelming. Every morning when I wake up, I wished it was just all a bad dream. It’s hard to be happy without feeling sad at the same time, but like you said, life is worth fighting for and I’ve never appreciated our love as much as do now. I’ll never again take for granted of life.

Jep, I am happy to hear that he will have the surgery. I will be thinking of you both and please let us know how he does.

-Brenda

Hey everyone,

Just a quick update — my husband had his CT scan last week (after his 3rd chemo cycle). We couldn’t be happier with the results as all his swollen lymph nodes have shrunk. Both of us were in tears when the first thing he said to us was “I’ve got good news”. Our oncologist said if he were to see his CT scan without knowing he’s a cancer patient, he would think he is a normal healthy person

I don’t know what the future brings but this certainly gives us some hope and renewed energy since chemo is getting really tough. We’re hoping that chemo would really take care of the nodes so that he can have a long life ahead without suffering.

Thank you all for your advice. Everyone in this forum are truly remarkable and I promise to find a way to contribute back through every possible way — be it time, donations or advice.

Warm wishes from freezing Amsterdam!
Siti

Yay Siti, what wonderful news! I'm so happy for you and your husband

AlexandraZ wrote:Yay Siti, what wonderful news! I'm so happy for you and your husband

Thanks Alexandra! I hope you and Jesper are enjoying your break in Mexico. I hope you’ll have a good meeting with the doctors at MSKCC. Sending positive vibes your way!